I'm a mother of 2 beautiful boys. My youngest, Ezra, was born with Recessive Dystrophic Epidermolysis Bullosa.
Having never heard of this before I was overwhelmed with how to care for him and devasted to hear his life would not be normal because of his very fragile skin.
He is 7 yrs old now and he is my hero!
Twice a day he faces dressing changes, new blisters, sores in his throat, on the eyes and anywhere there is dermis. There are many other complications because of E.B: including anemia, contracting fingers and hands, scarring in esophagus just from eating and much more. (He was also this year diagnosed with Diabetes Type 1.)
He is SO brave & full of life and just wants to do what other boys his age are doing.
He loves Star Wars, Legos and playing Minecraft and anything on a gaming system : )
I am doing this fundraiser to do my part to help raise money for research and hopefully one day (could never come soon enough!) a cure or treatment to help him and all the other children to live a life without pain-without E.B!
Lots of love,
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